BACKGROUND

Myeloproliferative neoplasms (MPN) are a heterogeneous group of disorders characterized by the cellular proliferation of one or more hematologic cell lines. Patients with MPN who are Philadelphia-negative such as those with Polycythemia Vera (PV), Essential Thrombocytosis (ET), or Myelofibrosis (MF) experience a cluster of symptoms related to the disease activity which can affect their quality of life.

OBJECTIVES

This study aimed to explore the symptoms and symptom experience as well as lived experience of Filipino patients with MPN using a qualitative phenomenological approach to get a deeper understanding of the disease symptomatology.

METHODS

Twenty-three patients with myeloproliferative neoplasms were purposively selected according to: 1) type of MPN (PV, ET, MF) 2) status of MPN disease (newly diagnosed vs. chronic) 3) age (≤50 years old; >50 years) and 4) sex (male vs. female). The investigators conducted key informant interviews using a semi-structured interview guide. Interview scripts and narratives were transcribed and analyzed using categorical aggregation and thematic analysis.

RESULTS

Twenty patients proceeded with the interview (8 PV, 6 ET, 6 MF). The meta-themes identified were 1) symptom experience and 2) disease perception. Three sub-themes under symptom experience were a) heterogenous and complex symptomatology; b) dynamic nature of symptoms; c) living and coping with symptoms. Three sub-themes under disease perception were a) struggle with the concept of the disease; b) anxiety and uncertainty; c) acceptance and hope. The most common symptoms experienced by the patients were fatigue, bone pain, and abdominal discomfort. Vascular symptoms specifically headache, numbness, and problems in concentration were commonly reported by patients with PV. Fever and weight loss were the least common. Sources of anxiety/uncertainty include the unpredictability of symptom occurrence and blood counts, the burden of taking maintenance medications, the financial burden of living with MPN, and the unpredictability of disease and complications.

CONCLUSION

Patients with MPN had heterogenous, co-occurring, and dynamic symptoms which affected their overall productivity both at home and at work. Patients with MF had the most symptom burden while patients with ET had the least. This study provided valuable insights on disease perceptions, sources of anxiety, and coping mechanisms of patients with MPN. A deeper understanding of the symptom experience and disease perceptions of the patients will enhance the physician-patient interaction especially when discussing management options.

Human ; Symptom Burden ; Quality Of Life

RATIONALE AND OBJECTIVES

Individuals with myeloproliferative neoplasia (MPN) have blood cell parameters representing abnormal proliferation of the cell line/lines affected. Considering the implication of symptom burden scores to treatment response and disease progression, with the same implication among changes in blood cell parameters, a question of correlation between the two variables becomes inevitable. This study aims to determine the correlation of controlled blood counts, severity of symptoms and quality of life of individuals with MPN.

RESEARCH DESIGN AND METHODOLOGY

This is a cross-sectional analytical study and a sub-study from the Filipino myeloproliferative neoplasia quality of life (MPN-QOL) multicenter study. Secondary data obtained from the parent study will be used as primary data of this sub-study. Comparative analyses were conducted using Chi-Square Test of Homogeneity or Fisher’s Exact Test. Association analysis used Cramer’s V coefficient.

RESULTS

Data in this study has shown 52.65 years old as the average age of participants. Most participants had mild symptom burden at 60.53% with the most common symptom being fatigue. Comparative analysis showed the absence of identified statistical difference in the overall symptom burden severity among the three types of MPN.

DISCUSSION AND CONCLUSION

In this study, there was no statistically significant correlation between the severity of symptom burden or quality of life, and the degree of blood count control among the three types of MPN. In practice, controlling hematologic parameters has been a goal to achieve among patients with MPN. This study suggests symptom control and quality of life is not necessarily affected by blood count control.

Human ; Polycythemia Vera ; Thrombocythemia, Essential ; Myelofibrosis ; Primary Myelofibrosis ; Symptom Burden ; Quality Of Life